Today is a restful day. My head is filling up with new thoughts each day, but never clearing out the old ones. I tried to sort them out and I can’t…not even for a minute. So it’s just me and these hospital walls this afternoon and they don’t have nearly as much to say as I do.
But if they could talk, I bet they would tell me stories of all that they have seen. They would tell me stories of the children who shared Tessa’s fight–the ones who won and the ones who lost, and I bet they would give me advice on how to do this. These walls would probably tell me about the moms and dads who didn’t know if they could get through the long nights of crying, the early mornings, the separation from home, the bitterness and the worry. They would talk about the siblings who felt lost; and maybe, just maybe, these walls would share the secrets that would ease my mind.
But today these walls aren’t talking so I am left to find my own way.
Each hospital wall separates us from the outside world. Inside these walls is our new and temporary life. There is not nearly as much space as we would prefer, but I suppose we aren’t exactly on a vacation now are we? For now, the walls and the cupboards are filling up with what little bit of home we could bring. They are also covered in artwork from cousins, pictures from friends, potty charts with stickers, weekly schedules, along with very typical hospital paperwork.
I have spent some time examining these walls over the last week and a half. While I am thankful they do have some color on them, I have also noticed the flaws. Nothing too serious, though; flaws like little pen marks, scratches and dents that maybe give this room a little character. The flaws that indicate others have been here. Someone else has walked this path. So if there is one thing these walls said without saying anything at all, it is that we are not alone.
Friday we were greeted (by total surpise) by two families have definitely been in our shoes…one of which is still there. They showered us with gifts, food, and other novelties necessary to stay sane during the extended hospital stays. I met both of the little girls, after always just knowing of them.
These same walls that house me and my girl saw those girls, too. They hold the stories of their journeys. And now they hold ours as well. The mamas gave me advice and lifted me up with encouragement and strength for the fight. My nine months of preparation fell apart after about five days in here, so those ladies came in at the perfect moment!
We have been in the hospital for ten consecutive days. While that may not seem like much for now, I can assure you that it is…it really is. The seclusion has set in. Especially now that Tessa is neutropenic; and unless she decides that wearing a face mask is alright, we will be confined in our room watching construction outside and thinking of creative ways to play with what we have available.
But Tessa is doing good. Her counts are dropping like they should, but that is a process. And then we will wait for them to recover. Then we will go home for short stay, only to return and start the process over. (That whole process is a blog-worthy post itself, but today it isn’t worth the effort…just click here.)
Of course this is extremely difficult for Tessa. It is also terribly difficult on our family. I miss Kendal so much that it physically hurts. Casin is struggling with what cancer is and how to handle his hectic schedule at home without both of us and his sister being there. Dan and I are still running the business over multiple phone calls a day and me hacking into the home computer to do invoices. Somehow in all of it, we still find time to be there for one another. Yes, this is crazy. My heart is stuck in two different places, begging to be whole again. I wish it was different. I wish she was better. As much as I want to take it away from Tessa, I want to take it away from the rest of us as well.
These walls have definitely witnessed our hard times and many, many tears. But they also saw late night boom box dance parties between a mama and daughter, afternoon naps between daddy and his big girl, celebrations over taking medicine, two large families jammed within showing the love, and the bonds that are strengthening despite the reasons why we are here.
There is a lot left for these hospital walls to see. Unfortunately, some of it will be rough. Even though I am apprehensive to share more with them, I am positive that more of what they will see will be strength and joy through adversity and love.
Get to us know us, walls. You will be seeing plenty of us…
We had the Madison Area Down Syndrome Society Walk on Saturday. I loved being there. Last year I dreamed of Tessa walking part of this year’s walk. Unfortunately, it couldn’t happen. She wasn’t able to attend. It killed me…but then I saw this…
Team Tessa Bug dressed in their yellow team shirts. And this wasn’t even all of them. They came from near and far to support us and to support a great cause. My heart exploded and so did my eyes. Tessa couldn’t be there, but we took her spirit with us and we took all of this love back to her.
THANK YOU #teamtessabug! WE LOVE YOU!!